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I'll try and be as short as possible, we have been caring for her for almost 7 years. It is to a point now that is becoming too overwhelming, almost unbearable.


Mom has some money (Medicaid is out), fantastic medical coverage, but they keep telling us caregivers aren't necessary. Even after Dr wrote prior authorization.


She has no other ailments, but insurance will cover nurse twice a week, physical therapist and occupational therapist...she doesn’t need that.


Need help bathing, simple house upkeep, meals... even just someone to babysit her so we can have a break!


The whole house is an open toilet, the bed is soiled multiple times a day...this is what we need help with... any ideas? Has anyone else had such problems?


She cant find bedroom, bathroom etc. needs 24/7 care, but wants to stay at home. We are trying to see that this happens...


any advice appreciated...

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OK, you want to keep mom in the home and you have the funds to afford caregivers to help. You agree to take on the job of interviewing, background checking, scheduling, paying and tax filing. You don’t want an agency because you may get different people all the time (not true in my experience) and chafe at paying $25 an hour when the aide probably gets $10 (I agree with you there). There is a website called CARE.com that you can subscribe to (cheap) where caregivers in your area list their services on. Have you tried that?
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Wornout19 Feb 20, 2019
Just created an account earlier today! Thank you!
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Are you saying that she has Long Term Care insurance? The policy should have the details regarding how to file a claim. You would need to be candid with the details. Calling her needing simple help seems off. If someone needs the help you describe, it's pretty substantial.

I might also gather all the documents and seek advice from an expert like an Elder Law attorney who is familiar with asset protection and Medicaid. I know you say she doesn't qualify, but, I'd get an opinion anyway.

I'd also seek a professional assessment to see what level of care she needs. An agency that provides home aids may be able to provide you with the costs for those services. Based on what you posted, you may likely need 24/7 care providers in the home. You can also obtain the costs for a facility. I'd inquire as to what Assisted living Memory Care entails in your state. The one that my LO resides provides her with total care. Most residents in MC are fully incontinent, based on my experience. They are also totally dependent on staff to get bathed, changed, and even fed if they are unable to feed themselves.

I hope you can find your answers. She may want to stay home, but, that is not feasible in some circumstances.
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Wornout19 Feb 20, 2019
No long term care insurance.
we did hire an elder law attorney several years back and as I stated in an earlier response, it was a waste of about 30k, all that was made better, was funeral arrangements.
she does not qualify for Medicaid until her assets are spent down, where as no issues paying for care as it is her money. Even it it were a private pay facility full time, but we will continue as long as we can.
saying we need help with simple care is just that. Ideally, someone to sit and watch over her so we can keep appts or run errands, just get a break. She sleeps quite a bit. Normally may want something to drink, and easy lunch and a snack. Help to the bathroom or to her bedroom. We do the rest.
her neurologist and pcp wrote prior authorizations for home care.
which was an rn, Pt, and Ot. Did not help as she doesn’t need them. She has no other ailments, is in great physical shape, but her mind has gone.
they came, did the assessment and we had them for a period of 30 days. We were told ther was nothing more they could do as she is not bedridden, no broken bones...no physical need I believe is how the coordinator stated it.
So, back in a circle...it’s just frustrating.
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My 2 cents. You are not going to be able to keep Mom in her home and have time for yourselves. If Mom has the money, I would place her in a AL. She will, be cared for and you will have time to yourselves. Her needs will only become more and more. Sell the house for her care.
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Wornout19 Feb 20, 2019
She can not be in assisted living, as she can not do anything for herself. We do everything. Cook, clean, meds, bathe, laundry. We do all of it and have for almost 7 years.

when she was still capable of being out in public, we took her everywhere with us. Shopping, dining out, our lakeside camp.

its not about selling the house or anything else to get money for her care. We have the money.

what we have been finding since yesterday is that going through an agency is not what we would choose first.
we don’t want different people all of the time as this makes her more anxious and confused.
we don’t want to pay an agency $25-$30 an hour for the person providing the care to only be paid $8-$10.
We placed an ad, and will interview and do background checks ourselves, and move forward from there.
we are simply looking for a few hrs a week help, so that we can get in appts that are still necessary for us to have. We have time to ourselves when she is sleeping. That isn’t the problem.
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"The whole house is an open toilet, the bed is soiled multiple times a day..."

Who is "we"?
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Wornout19 Feb 20, 2019
myself, boyfriend and daughter.
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So, Medicare WILL pay for an aide, bath aide, etc. but ONLY if the patient requires skilled care. (see this link: https://www.medicareinteractive.org/get-answers/medicare-covered-services/home-health-services/home-health-covered-services)

So, if you accept the RN, OT and PT as necessary to this situation (OT will help you keep her home safe; PT will work on strength and mobility; nurse will monitor her health, bp, O2 levels, etc) she WILL be eligible for a bath aide, housekeeping, etc.

Does that make sense?
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Wornout19 Feb 20, 2019
It does make sense. We did exactly this. Rn 3 times a week, Pt 2, OT 2. Bath aid once. Guess what? After 30 days Medicare will no longer cover it, because she is not bedridden.
Never the same person which caused only more confusion, some days more than on person a day. And we would get the cal the morning that anyone of them planned to come...
the bathaid was there the longest...at most 45 min.

no break for us to make appts, grocery... was more aggravation.

coordinator was here yesterday as the 30 days was up. Signed papers and that’s all over now too...
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Wornout, I just feel for you.

Fantastic medical insurance - except that it does not cover the clear, basic needs of a person whose brain is diseased.

I'm not arguing with the advice that dementia care probably isn't covered by the health insurance, just gnashing my teeth at this yawning gap in health care. Dementia IS a physical disease! There are identifiable risks and needs! You can see why insurers wouldn't want to touch it with a stick; but in that case could somebody else please come up with a plan?

I appreciate what you say about your mother wanting to stay at home, and that the family would like to make it possible. But. If I were you I would still start looking at residential dementia care options and see what you can see. It isn't just that eventually home care will probably stop being possible; it's that you may find a really good facility offers therapies and care that will be way ahead of anything the family can provide. At least have a look - what harm can it do?
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Wornout, so from your last post it seems that you are trying to find a caregiver to help you out a few times a week in your Moms home? Have you tried googling agency’s in your area? An agent representative will come out for an assessment and you all can decide the extent of their responsibilities. Just fyi the agency I use to get mom a Homekeeper to sit with her and give her lunch 3 hours once a week charges $25/ hr.
There also is a Find Care button on the top line of this forum where you can put your info for InHomeCare and a search will be done. I’ve never used it so can’t vouch for that.
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Reply to rocketjcat
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Have you contacted a Home Health Care Agency and asked about their rates and availability for Personal Care, Home Health Aides, Bath Aides and Housekeepers?

You don't get this through insurance. You get it through private pay, or through Medicaid.

If you click on the "find care" button at the top of this site and put in your zip code, agency names should appear.
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I am assuming Mom is living with you. If in her own home, she needs 24/7 care at this point. She cannot be left alone.

Why is Medicaid out of the picture? Is her income more than the Medicaid cap?

Like Shell said, her care may have to be private pay.
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Wornout19 Feb 20, 2019
Yes, in her own home for the past almost 7 years. Yes, too much money for Medicaid.
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Health Insurance does not pay for Alzheimer/dementia care, unless there is a physical dx. Example, grandma has dementia and falls and breaks a leg then the health insurance will cover the broken leg and grandma's meds for dementia while in the hospital.

You have to look at the definition that her insurance company has for in home caregiver. Most insurance companies define in home care that is cover by them as "a person recovery from a physical illness such as but not limited to broken legs and is not able to do such tasks (cooking, bathing,cleaning, etc) on their own ( meets age requirements), and have little to no help. A person recovery from a major surgery and is not able to do such task (cooking, bathing, cleaning, etc)." The list goes on & on for physical illness. "Health insurance companies will cover OT & PT and some personal care as required do to the need of pt."

This is why people get Medicaid because Medicaid covers Alzheimer/dementia caregivers.

Drs do not know what insurance pays for or not, this is why they hire medical billers.

I am sorry to say if you want in home care you will have to pay out-of-pocket. This is something that we all face! There is not enough help to help families to get the kind of care that everybody deserves. You either get Medicaid to help and lose everything, meaning there is nothing to pass down to the next generation, or you pay out-of-pocket and still lose everything! Yes, there are ways around the system but only if you know Medicaid's rules beforehand and have the money for an Elderly Lawyer!

Bottom line, her insurance company is telling you that caregivers aren't necessarily because by their definition, it's not!
Call the insurance company and ask them "how do they define what and when caregiving is necessary?"

Sorry...for being the bear of bad news:(

Just my 2 cents
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Wornout19 Feb 20, 2019
I understand all you have stated. We hired an elder law attorney several years back. Let me tell you, it was a waste of over 30k!
About all that they took care of was better funeral arrangements! A complete and utter joke! Appalling to be honest.
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Who is telling you caregivers aren’t needed? If the doctor wrote prior authorization that it’s needed, his/her word is law. But quite frankly, it does sound like she is beyond in-home care. If her home is as bad as you say, caregivers will not want to come.

Has she been tested for Alzheimer’s/ dementia? She may not have physical issues, but she does have mental concerns. Not being able to find rooms in your own home and being “ok” with lying in your own filth are not normal. She would need 24/7 care and supervision and insurance, no matter how good, will not pay for that. Go back to her doctor and share your dilemma with them. They need to be proactive in helping you find her the care she needs.
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Wornout19 Feb 20, 2019
Yes, was diagnosed with dementia, then more specifically Alzheimer’s and lewey body dementia.
our home and mom, are both very clean, because we are constantly cleaning up after her. No one has had issues coming in, for any reason. Yes, 24/7 care is needed. We take shifts. Which is fine, it’s our choice. What we would like is a break once or twice a week. We have no issues paying for it, simply can’t find it.
she is very confused at all times, she wants to go home( her childhood home). Doesn’t know she is in her home of almost 50 years.
We have gone back to dr multiple times and none of them, primary, neurologist, psychiatrist...has been able to help. Only with sending in rn, and therapists.
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